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After a long and discouraging battle with all this I finally feel like I'm getting some where with all this,,,,I believe that I finally Have a Neurologist that Is Using the NINDS Criteria for Diagnossis...I have done alot of reasearch and found out all the criteria for exclusion and inclusion criteria and followed the flow charts and compared them to my symptoms and test results and brought this issue to my Neuro.Believe me it's very complicated thing to follow and alot of time is spent checking everything on my part because I'm not schooled as a doc.

He was very understanding and the evidence for what I have come up with supports my findings and he agrees with me and told me he had to run one test that did not get completed and one test that needs to be current before he can give me a Definate Diagnossis of PSP....He is the head Neurologist for both the V.A. hospital and the University Hospital and sgreed that four years of testing and retesting and still no diagnossis or trearment is way too long....

I'll have to continue this Because this site times out on me and I loose everything I type...So Cont.....

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7 Replies |Watch This Discussion | Report This| Share this:Finally.......After a long and discouraging battle with all this I finally feel like I'm getting some where with all this,,,,I believe that I finally Have a Neurologist that Is Using the NINDS Criteria for Diagnossis...I have done alot of reasearch and found out all the criteria for exclusion and inclusion criteria and followed the flow charts and compared them to my symptoms and test results and brought this issue to my Neuro.Believe me it's very complicated thing to follow and alot of time is spent checking everything on my part because I'm not schooled as a doc.

He was very understanding and the evidence for what I have come up with supports my findings and he agrees with me and told me he had to run one test that did not get completed and one test that needs to be current before he can give me a Definate Diagnossis of PSP....He is the head Neurologist for both the V.A. hospital and the University Hospital and sgreed that four years of testing and retesting and still no diagnossis or trearment is way too long....

I'll have to continue this Because this site times out on me and I loose everything I type...So Cont.....

See...My session ended...I thought so anyway....He said no more MRI's, CT scans or EMG''s will not be nessesary, that there is enough test results to support the findings and believes these last tests will be neg. to be more conclusive for the exclusion criteria to be met , and a definate diagnossis can be given. Being the Head Neurologist he was perty upset when he found out that I was not allowed or denied to see him or even had my case brought to him, Because he told me that being the head he was supposed to approve some of these actions that his staff were haveing me do without his knowledge.

I don't know about the proceedures for or in how the process goes other than each case is evaluated and gone over ny the entire Neurological team, and a treatment plan is proposed and a bunch of other steps that I probably am not aware of or that I missed but I still don't know why It's going to be another 5 months before I see him again....

Gotta cont...again seperately......

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Report This| Share this:Finally.......See...My session ended...I thought so anyway....He said no more MRI's, CT scans or EMG''s will not be nessesary, that there is enough test results to support the findings and believes these last tests will be neg. to be more conclusive for the exclusion criteria to be met , and a definate diagnossis can be given. Being the Head Neurologist he was perty upset when he found out that I was not allowed or denied to see him or even had my case brought to him, Because he told me that being the head he was supposed to approve some of these actions that his staff were haveing me do without his knowledge.

I don't know about the proceedures for or in how the process goes other than each case is evaluated and gone over ny the entire Neurological team, and a treatment plan is proposed and a bunch of other steps that I probably am not aware of or that I missed but I still don't know why It's going to be another 5 months before I see him again....

Sorry....Most likely Being a V.A. hospital has alot to do with it and the availability of appointments may also play a factor....who knows.....I do know this ....When I left the neurology department I was talking with the sleep study tech. and he saw mw later down stairs and said that the Neurology Doctor I saw was so pissed at his staff he was practicly yelling at them and was raising cane....to be polite....I knew he was getting angry about something when I left and thought it was something I said or something, I could just feel the tension and didn't get a chance to address a couple of questions about the C-pap machine concern.

The sleep study Tech gave me this bad that forces my mouth to stay shut during sleep ,I told him that I was haveing problems chokeing and caughing and sometimes vommiting during sleep because my gag reflex is so messed up that caughing sometimes makes me vommit. But useing that band to keep my mouth closed during sleep be dangerous and cause me to drown in my own vommit? Hind sight tells me it would So I'm choosing not to use it.

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Report This| Share this:Finally.......Sorry....Most likely Being a V.A. hospital has alot to do with it and the availability of appointments may also play a factor....who knows.....I do know this ....When I left the neurology department I was talking with the sleep study tech. and he saw mw later down stairs and said that the Neurology Doctor I saw was so pissed at his staff he was practicly yelling at them and was raising cane....to be polite....I knew he was getting angry about something when I left and thought it was something I said or something, I could just feel the tension and didn't get a chance to address a couple of questions about the C-pap machine concern.

The sleep study Tech gave me this bad that forces my mouth to stay shut during sleep ,I told him that I was haveing problems chokeing and caughing and sometimes vommiting during sleep because my gag reflex is so messed up that caughing sometimes makes me vommit. But useing that band to keep my mouth closed during sleep be dangerous and cause me to drown in my own vommit? Hind sight tells me it would So I'm choosing not to use it.

Once again got timed out...sorry...But I will admitt this is the first time in four years of going here I finnaly feel like something is getting done......and that someone is listening rather than just saying More testing.....Or your symptoms are highly entertanning....or your willing this to happen to ya.....It's all in your head......Every time I see ya you just keep getting worse and worse.....You have migraine without headache....I just don't know how a Doc can say those things to ya with the evidence and testing that proves something is wrong and not follow what is supposed to be followed even as far as Excluding or dissproving conditions that don't fit the symptoms. Mind boggeling.....

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Report This| Share this:Finally.......Once again got timed out...sorry...But I will admitt this is the first time in four years of going here I finnaly feel like something is getting done......and that someone is listening rather than just saying More testing.....Or your symptoms are highly entertanning....or your willing this to happen to ya.....It's all in your head......Every time I see ya you just keep getting worse and worse.....You have migraine without headache....I just don't know how a Doc can say those things to ya with the evidence and testing that proves something is wrong and not follow what is supposed to be followed even as far as Excluding or dissproving conditions that don't fit the symptoms. Mind boggeling.....

Agh...Not yet...It's the V.A. we are talking about here....First they, The Neurology Department. have to agree that its a definate Diagnosis..Even though I already fall into the Possable and Probable Criteria's, then they have to agree on a treatment plan....and because it's the V.A. we are talking about here....Appointments to be seen are anywhere between 3 to six months apart....So It still may take quite awhile before anything gets started....I know my next apointment isnt until june so they are still dragging thier feet with this whole thing...Who knows This may just be a new can of worms as well.....

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Report This| Share this:Finally.......Agh...Not yet...It's the V.A. we are talking about here....First they, The Neurology Department. have to agree that its a definate Diagnosis..Even though I already fall into the Possable and Probable Criteria's, then they have to agree on a treatment plan....and because it's the V.A. we are talking about here....Appointments to be seen are anywhere between 3 to six months apart....So It still may take quite awhile before anything gets started....I know my next apointment isnt until june so they are still dragging thier feet with this whole thing...Who knows This may just be a new can of worms as well.....

lepmanthank the obama health care program. I have just been told my record must be reviewed to see if i still need a neurologist or if a gp can take over monitoring parkinsons.

w

There are none so blind as those that will not see

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Report This| Share this:Finally.......lepmanthank the obama health care program. I have just been told my record must be reviewed to see if i still need a neurologist or if a gp can take over monitoring parkinsons.

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